A Wedding, A Holiday, A Hope

Three days before my sister got married, I was strapped to an IV pole inside a dark room in Jersey Shore Medical University Center. I had contracted a serious infection, and I was oozing with pain, and blood, and morphine. I'm surprised there wasn't a mushroom cloud around my bed; I was barely there, a body shrouded in fog.

Three days later, I hopped on a party bus, killed a Budweiser and watched my sister get married to her best friend. From the front aisle, my mother mouthed me instructions: "Take your glasses off! Pick up her train! Don't look at the baby, she'll want to come to you!"

I smiled anyway. The pain was mostly gone. My sister and my brother in law said their vows, they kissed, they kissed again, people clapped, and a-ha! A marriage was made.

Three days before this, I knew I would make it. I would have signed myself out if I was told to stay in. I mostly felt guilty; after years of planning, it had come down to the week of the wedding, and I'm hospitalized. For the first time in 370 days.

On Halloween, I begged for an early release and it was granted; we put Sadie in her zebra costume and took a walk in the neighborhood. And on November 2nd, we had the party of the year.

It was truly the best night of my life. Everything came together seamlessly: I had a fun date, my friends were there with me, my cousins and family smiled, and we all danced together in one, happy, sweaty pack on the floor. I delivered my speech and people laughed.

And I was so proud of my family, so strong together, so unbreakable. I am proud of my sister, of the woman and mother she has become. And I am grateful for Cliff, for being the man she deserves.

On the night of my sister's wedding, I saw joy and hope and family and...I saw outside of myself.

I saw outside this haze that I've been living in for years. And when I cleared the windows of my bubble, I saw love. I saw family and joy and bad music. I saw hope and happiness.

It felt so real to me, more than any of the misery I've known these past couple of years. 

It felt so possible.

It was astounding, in its strength. In its width. In the sheer enormity that was that feeling, that was that night.

It was perfect.

And I felt renewed. I've looked outside myself and wanted more than what I have. I deserve more. This shelter has too many walls, and I want to break them down.

I just returned from Hawaii, another magical trip, and I'm hoping to make it to Vietnam in May. I am dreaming again, and when I do...

I see it all.

Diabetes Awareness Month: My Story

My diabetes has been uncontrollable all night. I'm writing this with tears hot on my cheek, frustrated and nauseous because my pancreas is just not working, and I don't know what to do.

I've struggled with blood sugar issues for years, but they were always thought to be a side effect of the prednisone I took for my vicious course of lupus (which became unrelenting after my cancer diagnosis.) It wasn't until 2013 that I became insulin-dependent. And it was much to my surprise that stopping prednisone had no effect on stabilizing my blood sugars. It was a temporary sice effect, now known to be permanent.

Two weeks ago, when I was in the hospital, the doctors got a good look at what I deal with on a daily basis. My body, at this time, is responding oddly to the correct dosages of insulin. I am dutiful about taking my long and short acting insulin, but instead of stabilizing me, I'm up and down all day. Because my body is behaving this way, I'm classified as a brittle diabetic, and it's possible I have Type 1, or juvenile diabetes, instead of the more common and less dangerous Type 2.

My ideal blood sugar is between 75-100. When it's over 400 or under 70, a doctor should be called immediately. When it's low, I run the risk of lapsing into a diabetic coma.

Tonight, for example, my sugars have run from 400 to 360 to 199 to 60 to 44. My hands, feet and my head shake when it's low. My vision blurs.

When it's high, I get headaches, mood swings. When it's high or low, my heart slaps against my ribs with anxiety and fear. When it's low, I must immediately ingest sugar.

My body is on a suicide mission, an internal war fought by unwilling cells. I cannot pretend it doesn't threaten my joy, my work, my ability to live and lead. 

I take my blood thee times a day and I give myself countless burning injections. I scream from pain and cry from frustration. I feel impossibly frail and I fear I will fall asleep and not wake up one night. I am relying on my parents more and more.

I am 27. And this is my life with diabetes.

Donations for the fight against diabetes can be found HERE: donations.diabetes.org.

A Funny But Serious Post: Great Title, Kel!

I'm on day 20 of this dizzying sickness. It has been Hell, in the simplest, most humble of terms. And so for the last twenty days, I've lied (laid) (lay) (lie) in my bed, casually fantasizing about the gun emoticon on my phone...to, you know, jump out of my iPhone and take me out. Admittedly this fantasizing was done under the nastiest shards of pain, a shock so bad it confused me into thinking that I don't want this life, not like this.

See, I'd just need one fake bullet. Or two, because it's likely I'd miss and shoot my wall instead, and I've already put a hole in it by bouncing this ball against the plaster for the last oh, sixty or ninety days or so.

This ball's seen me through a lot of hard times. See, I've been down. Low, low, low. Lower than ever before.

I've never been low enough to picture the gun, to squeeze the ball, to embrace the sheer enormity of my physical pain and cry.

I don't cry very often. It's sort of a rule in our family, though not often talked about or discussed. It's kind of like nudity at the breakfast table. You just...don't. Dinner, maybe. But crying? It makes people uncomfortable. It makes me uncomfortable.

It makes me appear vulnerable. Ugh. So gross. So weak. So...mundane. I cry, because I'm not inhuman, but it's usually over commercials where the actors are aging from birth to college graduation in rapid order. Now those! Those are worthy of shedding some tears. Here's a favorite: (This is an audio-visual blog today, folks. Strap in!)

(My god, that kid is cute. Maybe one day I'll make one for Sadie. I definitely have a picture of her from every week.)

Back to the point: I didn't cry much before. And then in August, September, I hit the Wailing Wall of Tears. It was SobFest2013. It was gross. I became addicted to a certain Kleenex brand, like some Target-shopping commoner! I cried giving myself insulin because I didn't want to be diabetic; I cried when my mom said the wrong thing, even when it was benign; I cried when my dad begged me to get it together. I cried over THAT DAMN COMMERCIAL like ten times.

I cried and then I reached the Hole of Desperation and Blackness. Here's where all the Bon Iver and sad Paul Simon came in. I felt this way for awhile. Too long. And it was very, very serious. Serious to picture the gun. 

I considered going inpatient. I considered outpatient, and I still think group therapy is something I may do in the future. (Once I get over the miles-long waiting list of my fellow depressives: raise your hand if you have a favorite antidepressant!) I stopped one medicine and I started on a new medicine and I talked to my doctor and therapist for many, many billable hours. And one day, after a really good session that may or may not have included calling me out on my bullshit, I saw something differently.

My doctor said that she thought that I had PTSD. Post-Traumatic Stress Disorder. A disorder many cancer and chronically ill patients actually suffer from. (The stabbing needles; the time they literally cut my throat open and took my thyroid out while I had nightmares on the table...) 

I had all the symptoms: depression, anxiety, fear, disassociative behavior, lack of interest in anything except Sadie...

I had them all. And the relief flowed through me like it had when I was diagnosed with lupus and told that what I was feeling was real and it was not my fault. It is not my fault. Yes, people have it worse than me (so you've said) but this is my life, and it sucks sometimes. 

I started to talk about it with my cancer camp friends (First Descents, y'all) who had experienced exactly what I was going through and some of whom are still feeling it today. (Soon I'll hit you up for more FD money, but this is why.) They helped me to understand that I didn't have the life I did 2 years ago. And that I don't have the life my friends have today.

And while that may seem defeatist, it's also true. Like, extraordinarily true. I don't! I won't! I will not ever again, no matter how many vitamins I take or doctors I see. I never did. I just faked it until I landed on this sabbatical, licking my wounds and wondering how/why/dammit.

As soon as I started talking to my therapist--like, really talking with words that were honest, and stuff-- I began to feel a smidge better, and with that came purchasing items and Doing Important Stuff: buying a carrier to drag Sadie around the neighborhood, walking the dog, taking my pills, taking a tiny bit of an interest in living till I'm 40 (which I have probably never had an interest in because who wants to be in this much physical pain for that long?)...I got sick again. 

Really sick. Mouth sores in the shape of Very Large Plains States, like Montana and North Dakota. And there were rashes and fevers and two infections and it was all happening now, when my sister is getting married so very soon.

So I retreated. I cried. A lot. And I panicked. I said to my FD friend Hairband, I said, "I am going to ruin this wedding." And she said I wouldn't. And I won't.

See, this story doesn't have a happy ending, because I'm still working on that. I'm still trudging through the last couple of days of this illness, and then I'm gonna man up, get my hair colored and be a terrific (marginally okay) maid of honor for my best friend, my beautiful sister. I'll do the things, I'll get it done.

And I'll keep working toward what we call "radical acceptance." Acceptance that maybe, after 17 months, I still need to be at home, recovering. Acceptance that I made it through the rigorous disability process for a reason: state-mandated doctors determined I needed it to survive. Acceptance that these diseases and this hardship will always be a part of my life, and it will make it so difficult at times, that you won't want to go on.

But for now, I'm grateful I had people to tell me to get help when I needed it. 

And I am dreaming again. Of Kristie's wedding, in 5 days (!). Of a January spent in Los Angeles. Of my trip to Hawaii in December. Of my friends' annual ski trip. An FD reunion in 2014. And Erin's wedding in April (bridesmaid for the fifth time! 22 away from a movie deal, bitch!). And maybe a place in Brooklyn in the spring...

But most importantly:

Watching this love of mine, this heart that beats outside of my chest, go on and on.

Fear. Reality.

 

 

(Super Emo Picture I Took To Demonstrate My Misery, Obviously)

I am submerged in painkillers, but the pain is as clear as ever. I am a mouthful of open wounds; my speech is garbled, heavy with uncertainty. I swallow and inside I scream. 

I rinse my mouth in the bathroom and bang my fists against the walls. I get back into bed and sleep for an hour; I wake and do it all over again.

I try to listen to my meditations but they do nothing to penetrate my reality. I watch The West Wing and remain awake. I swallow another painkiller; I've lost count of how many I've taken today. I should be more careful; I cannot.

I feel like I am drowning; breathing through my mouth is not an option, but my nose is congested, so that each breath I take is shallow. I use nasal spray, decongestants, more often than recommended. I need a minute of relief.

I read my books and websites and forget what's been said a minute later. I rewind my shows and watch again. My attention is blurred. I do not drive on days like this.

I blow off my friends. I apologize but it must get old, right? I am never there when I say I will be. 

My sister gets married in 2 weeks and I'm afraid my sickness will still be present. I'm afraid I won't be able to celebrate her. I'm afraid I'll be tired and lethargic. I am afraid, I am afraid.

I need a break. I want a break.

This is my entire life, and I need more.

New piece on Thought Catalog

The cracks in my ceiling are a mountain range, but I’m not sure which one. The dust above is fog, crawling in to obscure the view of stars, made of smaller cracks in the plaster. The smoke detector is just some random UFO, nothing to worry about, nothing to be alarmed about.

On the days I call myself a writer, I invent stories. And like the world living above my bed, I memorize them, add to them, edit them and invest in them. But the dusty world above me has been my greatest material these days, as I fight anxiety when I long to sleep.

Link here: http://thoughtcatalog.com/2013/waiting-for-a-disability-check-watching-the-cracks-in-my-ceiling-grow/

Morning.

The past two days have been hellish. Travel always wreaks havoc on my body. And the past two nights have been no different. I sedate myself but to no relief. I'm barely conscious, awake enough to know pain.

This morning I drove to the pharmacy at 6am, just as it opened. I am desperate for relief. I am so done with this body, with this pain. But I'll never be tired of my life, and the joy and beauty that sustain me through so many awful days and nights. 

I am too attached to this life and this love to ever give up.

Tough Shit

Maddy told me to show my muscles, so I did.

I am living a full life through the pain.

I am living.

And that's how I earned these muscles.

One Day

We are trying to find a way to break up.

At 7, I wake up and drive alongside the ocean for 12 wide miles, a route I’ve done more times than I can count. I used to do it on my way to high school, to pick up my best friend, even though it was completely out of the way. I used to watch the sunrise, peaking over the dunes, over the mansions, empty in the winter and bustling in the summer.

Along Ocean Avenue, women run in pink and men are not there, already in the city for work by the time I depart at 7am. Jogging strollers smack the smoothed pavement, replaced over the winter after Superstorm Sandy.

The debris is less now; the summer is approaching its’ end at breakneck speed. It has been an odd summer, a bit crippled. We cheer when our favorite bars and restaurants and beaches reopen; we reconcile the fact that some may never open again.

I head over the bridge into Atlantic Highlands, the ocean behind me and the river on my left and right, Twin Lights lighthouse straight ahead. I’ve tried to take pictures of this view, but it simply cannot be captured. The blue water around me, stretching for miles.

I stop to get coffee and then I am at my sister’s front door, my niece clapping because she’s excited to see me.

The morning is hot, hotter than it’s been, a welcome August tradition of sticky seats. I believe in the weather, the moods, the feelings. The way the sun shines when you need it most, and rain for the days you need to stop and rest

Last night I didn’t sleep because of the sores in my mouth and the anxiety bouncing in my stomach, turning the walls of my gut raw and aching.

The baby and I visit my friend, my writing mentor. She asks about writing. She tells me I will finish the book when I’m ready. I’m not ready.

I drive in circles for an hour to let Sadie sleep in the backseat. I drive past Bruce Springteen’s house and remember the time I almost ran over his wife. When I pull back into my sister’s driveway, the baby’s face is red and angry from the sun streaming through her window. Fuck, I think. Sunscreen.

I’m shaking from the pain as I lift Sadie into her crib. I pray she will sleep. I take a painkiller. I rest on the couch.

We go to the park, me pulling Sadie in her wagon, her laughing as I imitate a train. She is so easy, this one. So full of light.

The young boys at the park on their skateboards make me so nostalgic for my youth I stop and take a breath. They are sweaty and throwing empty soda cans at each other. The girls on their bikes look at them as they pass the park, already deciding on which boys are cute, taller since June. I remember this feeling so strongly, how we loved the boys before they knew how to love us.

When I get home, I talk again to B. I say I think we are making the right decision, that for me, a weight has lifted. He says he will always be my biggest fan. We are not breaking up because of lack of feeling, and so perhaps this is the saddest end of all. I dangerously let allow myself a sliver of hope to cushion these sharp edges. But I feel lucky to have him  as my friend, the first man that I’ve dated that I know I will be friends with forever.

I know now what they mean when they say that timing is everything. It really is. I got a niece just as I got sicker than I’ve ever been, and her love buoys me through all the shit. I got BJ when we both weren’t in a place to love each other properly, but I get to keep him, albeit in a different space.

I confirm my reservation for my hotel in Big Sur next weekend, the long weekend a perfect time to give us a breather. The holiday, the bookend to the summer, always makes me a little sad. But I’m already a little sad, so I shall bid summer adieu in my favorite place on earth with my best friend and his daughter.

The night stretches into the early morning and I sleep in hour intervals. I miss him, even though I’ll see him before I go to LA. I enroll in a Shakespeare class to fill the fall. The autumn will be full of traveling and my sister’s wedding and time, constantly unfurling, bringing us to where we are, whether we like it or not.

And on and on we march.

Lauren

My friend is dead. She has been dead since Thanksgiving. 

I am terrified of the monsters that roar inside of me, waiting for the right moment to strike. I hate the parallels in our stories. I hate the word cancer. I fucking hate seeing it everywhere. I get sweaty and nauseous. I fucking hate that word. Why does it have to be everywhere? Can't it be like You Know Who? Why do we have to say the word so much? Voldemort, cancer, Voldemort. It's put a trace on me, that word. It's everywhere.

I visited Lauren's mom with my old coworkers yesterday and at times the silence was thick with our own memories and recollections. The copier in the blue room where she told me she had melanoma. The ninth floor of 16 W 22nd Street, New York, NY. A place I'll never be again.

We talked about it, a lot. I was her "cancer mentor," we joked. We hated the word, we hated the smell of hospitals, we hated the shitty food and the steroids and the ways our bodies were carved and shaped into something we didn't recognize.

I miss my friend. I miss our little community. The two of us and a tie that would bond us forever.

Sometimes I see a really cheesy "beat cancer" ad and I want to laugh maliciously at it with her. We made fun of those things. 

We wanted to believe we were as real as we could be about cancer, but we were both terrified and sometimes we could not speak of it.

Some days I can't believe she's gone. I worry about the monsters. I feel guilty telling her mom I'm doing well because her daughter is dead.

No matter what my troubles, my pain, struggles, I get to live. I get to fall in love and eat and sing into my hairbrush and drink and tattoo my body and live. 

Lauren doesn't. All of her memories have been made. They're for us now. And it's so fucking unfair, because I never knew someone who wanted to live as much as she did.  I survived and some days I don't move from my bed. Lauren would understand but I should be doing more.

I have to live more, because she can't. I have to be kind and live big and write, like she always bugged me to. I need to write about cancer and the word and how heavy it hangs around your neck. 

I miss my friend. But I'm going to keep on. 

I'm going to Be Kind and Live Big.

New Huffington Post Piece

http://www.huffingtonpost.com/kelly-bergin/escaping-chronic-illness_b_3677180.html

Rooted

Here’s the thing.

I love Los Angeles. I wish I still lived there. When I lived there, it was right for me and I felt great.

But that was before Sadie.

I’ve been traveling a lot this year, and when I’m gone for more than a week, I worry she’s forgotten me. I worry she might even miss me, even though she’s only 9 months old. I worry I will miss something.

Three days a week I have her while my sister and brother-in-law (to be) work. Three days a week where my life is so much brighter, where my life feels like it could be so much longer. 

I never want to miss one of those days, those weeks, those months with her.

I’m rooted now, in her. In her red, curly hair. In her Army crawl and loud giggles that attract the attention of everyone in Wegmans. She’s not mine–she’s got the greatest mother in the world–but she’s attached to me in a way I didn’t expect but so, so cherish.

So, no; I’ll probably never live in Los Angeles for more than a winter at a time. I’ll probably move back to Brooklyn when my health is right. I’ll never leave Sadie, not for long.

This is the only place for me

Get Me to Dry Land: FD2 in Montana

One year ago, I headed to the Outer Banks for my first program with First Descents, an organization that provides outdoor adventures for young adult cancer survivors. As many of you know, this program has enriched my life and pushed me to do things I'd never dream of doing before cancer. (See: that half marathon relay I ran.)

I remember coming home from my trip a year ago, invigorated and changed, telling everyone that surfing was the hardest sport I'd ever tried and that kayaking next year would definitely be easier. I couldn't imagine being more exhausted than I was last June.

(Ha.)

And that's truly what I believed until this past week, when I headed to Montana to kayak for my FD2 program.

I truly thought kayaking would involve just floating down some rapids. No standing up in the middle of ferocious waves.

But no. Whitewater kayaking is nothing like surfing. Yes, it's physically demanding and there's like, this water stuff, involved, but you're in a boat for 6 hours at a time. There aren't any breaks to hang out on the beach and eat grapes while ogling at surf instructors like I MAY have done in the Outer Banks.

If you're cold while you're kayaking, you're going to stay cold for six hours. If you're sneezing and coughing, you have to stay on the water, even though you are praying to God to make the week fly by. Which I did, more than once.

Kayayking can be pure misery if you're weak or tired or cranky. Three things I've been known to be.

And yet, I had one of the best weeks of my entire life.

And I was about to faint, shaking like a neurologist's dream patient, tired and exhausted when I realized it.

It was our first day on the water, and we had just graduated from the lake to the creek. Toward the end of the day, my kayak had flipped, completely surprising and scaring me.

When the boats came to save me, my already broken and bent arm was caught between a tree and a kayak and I was halfway submerged and in swirly water. I swam behind the boat to a little island where my camp directors and guides helped check me out and empty my boat. I was bruised and scratched and tired...

But I felt completely fucking alive.

And for me, this feeling of vitality saw me through a week where I felt like shit and wanted to sleep all day. I picked up a cold that steadily worsened throughout the week, and I couldn't kayak much because of my broken elbow and busted collarbone. (Turns out those two particular bones are useful when it comes to paddling.)

There were certain points of the week where I watched new friends challenge themselves and I felt helpless and stupid, a log on the sweeper raft that carried our gear and supplies. Every time my thoughts strayed this way, I tried to infuse myself with the inspiration I felt watching my friends surpass their own expectations.

At night, we ate great food and talked about cancer, how it had changed and hurt us, opened and broke us. How to parent, or decide to parent, or take on relationships with this heavy weight sometimes feeling like it was squeezing us tighter and tighter each passing day. We talked about how to kayak with cancer and how not to kayak with cancer: we talked about how to let yourself off the hook.

For a trip that could seem to others as depressing or morbid, I felt more alive than I have in months, even while admitting I was down for the count, not as strong as I wanted to be.

I have always struggled with pretending it's all okay in order to do the things that I've wanted to do: I went to a music festival in Tennessee two weeks after my appendix burst; I put off the doctor for a week when I broke my arm last month; I ignored the golf ball in my neck that turned out to be cancer. I regularly switch between telling the truth about how I feel and turning and telling everyone not to worry. I do it for others, but I mostly do it for myself.

You're fine, I'll say. This hurts, I'll say. I want to give up, I'll say. I want to keep living, I'll say. All within the course of a minute in my head.

This week reminded me that that is what life with illness is about. Leaning into the hard times (or the current) just so you can shoot down the rapid ahead. And that excuberance you feel when you look back and see what you've done?

That is joy. That is life. That is out living it.

Thank you to First Descents for another amazing week. Patch, Pedro, Braveheart: your friendship means the world to me. Thanks to our camp moms, who I want to adopt me so I can have a trio of moms badgering me about water. And thanks to Bomb and the Dude and our AMAZING guides for taking such good care of me.

I'm planning to run/walk a 5K in order to raise money for this organization that has taught me so much. You can donate here: http://teamfd.firstdescents.org/2013/fd/kellybergindotcom/. Thank you kindly!

My Trip to Friday Harbor

On the morning of May 23, I woke up at 3 am and shoved the rest of my stuff into a bag. I got my brother and we headed for the airport. I was on my way to Friday Harbor, an island off the coast of Washington State.

When I arrived in Seattle after two flights and little sleep, I hurried to baggage claim to reunite with Matt and Maddy. And then Jenn, a stranger to me but a friend to Matt, picked us up in her van and we drove into the city.

I saw the Space Needle and it was there I realized the sores in my mouth were worsening at a rapid rate. The dry air on the plane hadn't helped. I pushed food around my plate and tried to engage, but talking hurt and my mood was damaged by the pain.

For the first three nights of the trip, I laid in my bed in Jenn's sailboat in her yard and cried silently from the pain and from the rawness of emotion that pain exposes.

I was surrounded by what would become new friends and wonderful children. And yet, I couldn't connect. I couldn't be me, because I couldn't talk.

I am loud, talkative person. I have opinions. I am fun but I worried these new people thought I was stupid, or snobby, or just awfully quiet. I wanted to go home, even though I was surrounded by tremendous beauty and wonderful hospitality.

The illness had followed me on vacation. And the juxtaposition of beauty and pain made me sick and insecure.

I wanted to be myself but the ulcers in my mouth stopped me. I wanted to make people laugh. I wanted people to like me and I was so afraid that they didn't. I wanted these people to be my friends and was afraid I was missing my only opportunity.

Sometimes I am struck by how different my life is from my peers'. Everyone gets tired and everyone's back hurts but my pain is different. It is cutting and unfixable and I'm tired and my back hurts too. One of the kids remarked on how much I napped and it broke my heart a little. I want to have their energy.

But all I really wanted was to be my self. The person who I am, the person I have worked to be.

A few days into the trip, I was having a good time but struggling, knowing how much better my time could be if I wasn't in constant pain. I took some very strong drugs and suddenly, the sores faded.

And I came alive.

I noticed the change in these strangers (strangers who I now call friends) attitude towards me. They were absolutely nice before, but now I felt like I was a part of something. I felt I had blossomed and bonded, just in time to make what I hope to be lasting connections.

I have friends who marvel that I travel when this ill. But I travel because I need to get out of my head. And feeling so sick while I was away truly challenged me. It crushed me.

Luckily, I had a great time. I saw beautiful places, met beautiful people. I bonded with children who will always have a piece of my heart. I spent time with my best friend and his kid. I met Jenn and Sara and Daniel and Rebecca and Kerry and Luke and Olive and Betty and Lucy and Henry and Thor and Rylie and I felt accepted and loved.

Traveling teaches me about myself. How to persevere and take that hike, despite the pain. How to speak by listening. How to reconcile rot with beauty, pain with treasured experiences.

This trip consoled me.

This trip taught me and showed me beauty. This trip reminded me that I am living a full life, despite the pain. And no matter what, I will keep doing it.

Cancer Turned Me Into a Hypochondriac

Hearing the words "You have cancer" at 21 permanently shifted my outlook on health. Although I've had lupus and an immune disorder since birth, cancer was confirmation that all my crazy hunches were right. Since the golf ball in my neck turned out to be cancer, what else might be lurking in my body, waiting for the sunlight to hit it just right?

More...

New Huffington Post Blog

Depression and Some Other Stuff

Hi. I haven't been here in awhile.

It's not that I don't have the time. Boy, do I have the time. I have the time to watch TV and babysit my niece and take long rides to the beach on the bike my legs are too short for.

I have the time. But writing or reading might remind me that I should write or read, and I don't think I'm ready for that.

But maybe I am. Yes. Here I am.

In May, I was put on a drug for nerve pain. I immediately had a bad reaction to it, and we reduced the dose. Two weeks later, I held a bottle of morphine in my hand and did the math.

It'd probably take a few of these plus a couple of Xanax to kill me. I held the bottle in my hand and thought about it, how I wanted to be dead without having to do it.

But I stopped.

I reached out and I got some help and I saw a guy, a doctor. He told me that the drug had caused a really bad reaction, making me suicidal.

I would describe myself as prone to depression. I have a million excuses: I've basically been bed-ridden for 9 months. I am living at home. I don't and can't work. Writing is fleeting when I feel like this. It's hard to get me out when I'm sick.

One thing stood out every time I thought about ending my life. My niece's face. It shone like a sun every time I collapsed into the blackness of my head, of my bed. I could never do it, I thought. I would never ruin my family and friends' lives like that.

But boy, did I want out. I wanted no more of the lupus, the pain, the depression. The loneliness and fear and boredom. I just wanted to sleep.

I don't know when I started to get a little happier. I think it was around when I booked my trip to Washington. That gave me something to look forward to.

Eventually the drugs flushed out of my system and I was no longer on the floor. But sometimes, I'll catch myself crying over nothing, though those days are less and less now.

I guess I wanted to say that there is where I've been. Under my covers, wishing the rain to stop and the sun to shine. Grasping for glimmers of summer and riding that until I am out of my bed and biking to the beach to see that sun rise.

If you feel the ways I've just described, please get help. Not everyone is going to understand but someone will, and they will save your life.

Thank you for your support. I am feeling less like a Cymablta commercial and more like a real person. I'm blessed. We all are.

I am out of bed and I am smiling and I wish the same for all of you.

I Fell Down a Bunch of Stars and Wrote a Rap About It

Saturday I was straight trippin

Itching to get my summer clothes

Went to my parents to search for robes

Found a bunch of sundresses to my delight

Little did I know I almost didn’t survive the flight (of stairs, doesn’t rhyme)

The pile of Forever 21 dresses lay in my arms

Barefoot, no socks to slip on

I approached the top of the stairs like I was pro

Been walking since I was 1, not to brag, yo

Made it down one step and much to my surprise

I almost had an untimely demise

I tripped then stopped then started again

When I looked up I was at the very end

I started to cry, man I started to scream

My dad found me face down in the stream (of blood, doesn’t rhyme)

My nose is bruised, my forearm broke

But I refused the ER, a $500 premium ain’t no joke

Been a few days and I’m all rusty and sore

This blog’s titled nine lives so again I endure

Can’t kill the Berg, can’t get her down

Maybe this summer I’ll up and drown!

END

It's been almost 2 months since I traveled to Colorado and Las Vegas. But in 8 days I head to Friday Harbor off the coast of Washington.

This lupus flare has had me back at home in NJ for almost a year now. I worry that I'm regressing, watching my friends bolt forward while I remain stationary.

I don't think I'd survive if I couldn't travel and write. They're the only way to get out of my head, and my body out of my bed.

One week, one week and I'm in the air again.

Location:Flight

National Magnetic Poetry Month Continues: God Edition

I wrote another "poem" at 5am, you know, because drinking a Monster energy drink last night was a good idea.

This one's a little God themed, but let it be known how I don't plot these, think about them, or even have an idea about what I am going to shove together on a magnetic surface until I sit in front of my sad, 20 year old mini-fridge. So maybe it's about God. Or maybe it's not.

Who knows? It's just magnetic poetry, yo!

Text as I'd have done it:

Some life
never needing
your coffee dark
or the
sky blue

It is almost
like asking
to laugh
to explore
to want
would poison
your sacred
vision of the
after world.

You are steel.

But you
must bleed.

For to be
healed
is to
trust
God.

and you must
embrace this
wild, broken, brilliant
present.

National Poetry Month

UPDATE: I'm free from the hospital. Thanks for the good wishes. Carry on.

It’s still National Poetry Month, or I have renamed it: National Magnetic Poetry Month Using the Geek-Themed Set I found at Target for a Dollar in College.

This was my attempt at romance but ended in a ode to food, as most poems do.

This here below would've been the actual text if I'd had more prepositions/control of my brain.

(I'm in the hospital because lupus may be attacking the old noggin.)

Anyway, here it is:

NACHOS: A LOVE STORY

Stun my

cloudy brain!

Boost me up!

Set fire

to this

native world!

But protect our love.

So we can be

content in this,

our new planet.

With you,

there is joy

and

love

and

nachos.

National Poetry Month

It's National Magnetic Poetry month!

Or just National Poetry Month.

Here's my contribution. If you can't read it, I'M SORRY. I sat on the kitchen floor during my insomnia (still haven't slept yet, hi drugs)...so here's the text. I really missed having more words but I only have the "Geek" version of Magnetic poetry that I bought at Target for a dollar.

I'm a pretty serious poet, guys.

Here's the text as I would have liked it:

If you need
to get out
of this world

Do it.
Battle evil,
live in action,
and write about the war.

But then, will you
please come home to me?

For I, too, am fire.

And together,
we are
love
light
and joy.

New Huffington Post Blog

Read here!

http://www.huffingtonpost.com/kelly-bergin/chronic-pain-and-pep-talk_b_3047579.html

Happy Birthday, Dad!

After my mom, sister and I take a walk, the baby naps in the Pack and Play upstairs in my sister’s childhood bedroom. I sneak away into my apartment over the garage. My sister is on the phone with her fiancee.

I kick and roll and beat on the comforter, I whine and moan and scream no no no. I pour Vaseline into my nose, my mouth, the Anbesol a coat for one gust at a time. I see there’s no choice: the roof my mouth pulsates so I take a Diaulidid. The sores in my mouth and nose bleed, bleed, bleed. They wrecked my pillow in Vegas the other night. I am so exhausted.

My mom texts to tell me it’s time to come back because we are eating for my father’s birthday. I cannot and do not eat but I sit at the table (I have always been made to for which I am glad.) Sadie cries. I pick her up and bring her downstairs, careful to walk slowly, careful not to fall.

We eat dinner and my father is happy, my parents back together, always in love (they have never stopped; there was just so much more than love). My mom is not drinking. I am slightly under the haze of the drugs.

We FaceTime my brother and tell my dad we bought a new canoe for the lake. My sister presents the flourless chocolate cake. I burst into tears accidentally because a piece of my dry lip falls off as I brushed my hand to my face. I get it together. We cheers. We sing. We adapt and adjust like we always have.

The baby is 6 months old and she waves and I love her, and them, and the way we could be perfect, even though I am always broken, I am always making them wish I could be okay.

This is how we have always been, me the oldest, the younger ones knowing how to handle my sickness. They are the closest thing to understanding it without having it. They are family. The best family. They are love.

First Descents

I'm in a bed in a lodge near Vail, Colorado. Next to me sleeps one of my fellow campers from First Descents (FD).

There were about 15 of us on that trip I took to the Outer Banks in June. We learned to surf. Our ages ranged from 21-38. There were more girls than boys. We kayaked and swam and at night played games and eventually we could talk about cancer, how it had ruined and invigorated us, how we were trying to live our new lives as survivors and patients. How to raise children and buy houses and live like our life expectancy hadn't been trimmed the day we were diagnosed.

We had an amazing week. It was special; we all felt it. A few months later, the organization (which is quite large and ran 50+ kayaking, surfing and climbing camps last year) announced our camp had won the Golden Paddle Award. Usually awarded to the highest individual fundraiser, our camp was the first collective recipient. First Descents believed we embodied the spirit, the connection and the dedication to the organization.

The award will be given out tomorrow night at the annual FD Gala. I've been tapped to accept the award on stage and ask the partygoers to remember Hardcore, our beautiful friend and fellow camper who died last week. I will also ask the gala to stop for a moment and remember the campers who have died from cancer.

Tonight, as we drove home from an FD-sponsored happy hour, I felt sunk, instead of buoyed by my fellow FD-ers who had been able to make the trip.

Although we text every day, physically witnessing friends who have become so close to me struggle in pain is awful, heart-wrenching and nauseating; I now have an inkling of how my friends and family have felt watching me. Knowing that some of these friends I've made will succumb to cancer before me guts me as well. These are people who I have known 10 months yet am closer with than friends i've had for years, for the simple reason that they understand. Simply, very simply: they have been there, and they understand.

When I met my friends at the gate in Denver today, we immediately started up laughing and joking, discussing painkillers and poop, and tearing up over the loss of Hardcore.

This community has changed me. It has changed my life and the lives of others for the better. And it has taught me loss. It will keep teaching me loss.

Tonight, as I looked around at sick friends at the bar, I cursed this fucking disease. And I remembered life isn't about big moments; it's about these connections and the hope they give us. It's about the small moments of love and connection that become so large when you look back on your life.

And that's what I'll say tomorrow night as I accept the award on behalf of my camp. FD is hope. FD is power. FD is love.

New published piece–check it out!

http://thoughtcatalog.com/2013/thailand/

This Monday Sucked for Most of Us, Right?

Last night I fell asleep at 11 and woke at 12 to a phone call from one of my best friends. She called to tell me our friend from First Descents ("Cancer Camp") had passed away the night before. FUCK, I said. I have been saying Fuck all day.

I haven't cried, even though Hardcore (camp nickname, tradition at FD) came out to support me in Denver when I ran for Team FD. I haven't cried even though Hardcore sent me a care package with a necklace from Etsy not a month ago, when she knew she was dying. I haven't cried at all.

I went to my nanny job and ran around in the backyard as it hailed with the kids and the dog. We jumped on a trampoline and I played the drums. I didn't say Fuck in front of the kids but every text I got about hardcore's death made me feel the punch of that word even louder. I banged the snare drum, I crashed the cymbal with my stick until it was loud enough to make sense.

Matt texted me that Jason Molina had died and the misery started to add up. I drove home and blasted "Just Be Simple Again" and thought that he wrote songs with feeling, with feeling and how rare is that?

I've been laying on the floor for an hour, vomiting and sick. I leave for Denver Friday for the FD Ball, an event Hardcore was supposed to attend. And then instead of booking a flight back East, I booked a one way ticket to Las Vegas to hang out with Matt for a night. Then we'll drive to LA, where I have no place to stay, really.

 I am being careless. I have no money, I don't give a shit.

I can't tell if I'm desperately trying to grasp "living" in the way First Descents encourages us. (Please google them and learn about them, they are so vital to young adult cancer survivors).

I can't tell if i'm "out living it" or running the fuck away from something that cannot escaped. From the fear of losing more, to alcholism and to cancer. From the fear I'll relapse, too.

All the ones I love,
they are so precious.
They are so easily taken.

Fuck.

No Sleep Till...

(This was an email, like The Daily Lupus instead of The Daily Rumpus or something, but only to one person and now I suppose it's to all of you.)

Good morning! Happy Spring Forward!

I'm excited about this but I haven't been able to sleep in days. Yesterday everyone was over for my niece's christening, 60 people nicely asking how I am. And I'm cranky (actually, I'm crangry, a word I invented that means cranky, angry and hungry), but I'm trying to be okay so I say "so tired" because I'm too tired to lie and say that I'm not, so everyone starts to tell me how my sleep patterns are JUST like a new parents. You know, the kid's up every couple hours to eat or cry or poop, which sucks, but I'm not a newborn baby, I'm not a parent, I'm just a 27 year old human being who has not slept more than an hour straight since Thursday morning. (Plus, I don't want a damn baby! And if I do, I'm getting a baby nurse because this. shit. is torture.)

Anyway. I know this accuracy of my sleep timing because I keep a sleep app open and it tells me these things. I'm not sure how much I believe in its' accuracy when it comes to measuring REM and that stuff–it's just an iPhone, and maybe it's just an iPhone and CAN do that, which is perhaps scarier–but what I do is hit the sound machine button when I'm going to sleep, and then swipe it when I wake up.

Right now I'm experimenting with different noises Sleep Cycle offers. The rain made me have to pee and so did the babbling brook. I went again with no noise. Then some white noise, brown noise, pink noise, no noise again, city noise...

I once lived over my favorite bar in the Bronx, in the neighborhood where I went to school. It was so loud, but I slept fine, probably because most of the time I was passing out from drinking too much at said bar. That was before I had cancer though, and although I've had lupus and Other Random Diseases since I was a baby, the cancer changed my body for the worse.

The loudest place I ever lived was that castle building in Hollywood/Los Feliz. At night the LAPD choppers would scream above me, and I always felt like an earthquake was coming, and I was excited and unprepared and already shaping the narrative of how I'd tell it: "So, I had no flashlight, and my iPhone battery was down to 88 percent...". The earthquake never came. I didn't sleep well there either.

But this is bad. This is hospital bad. Hospital bad is a different sort of bad because they wake you up every 2 hours to check vitals and there's always doctors and nurses and priests trying to save your soul streaming in and out. But I'm not in the hospital, and I wish I were, because at least then I'd have IV Dialudid (legal heroin, basically) shooting into my veins and I wouldn't be so fucking aware that I am awake. Also, they have cranberry juice there, and I could really go for some right now.

I'm rambling.

My eyes are crossing again which means it's time to close them again. I can keep them open for about 10 minutes, enough time to pee and tweet and complain. I can type when they start to cross, but only with one eye open. Reading is hard, I forget everything I've watched on TV, I keep re-reading recaps of the episodes of Scandal I've watched (all caught up!). I don't have the energy to watch last night's Girls but watching The Bachelor's okay because it's just a blur of molded flesh, tan against the blue background, the white snow.

I'm going to try and go back to sleep again. But my mouth is getting worse. And I'm taking oral pain meds and Advil PM and even half an Ambien but I'm awake, and it sucks. I'm sorry for complaining and not bothering to edit or reread this. You can correct my grammar and tell me to throw the iPad away or maybe give me a remedy. Just don't say guided meditation because at this point, my subconscious has visited every damn beach in the world with Bachelor Sean Lowe and yet here I am, wide awake (and it's morning).

I guess I have to say one more thing, and it's this: I wake up screaming "NO!" or with my head pressed into the pillow, my face scratching back and forth against the pillowcase as I try to stay asleep. I am screaming sometimes. Maybe I am an infant. Maybe this is all a bad dream...

OK. Back at it. Talk to you in an hour. Or maybe 18.

Love,
Kelly

New York City

What to say but that I have an incredibly full life.

I have friends, long time friends, short time friends. I make friends easily, I am charming, I can shake a hand and tell jokes and sometimes it's the old Bergin bit, but they don't know that yet, they are new. And my friends smile when they introduce me and I feel warm and glad and being outside is wonderful.

On a Friday night, I sit in a bar for four hours with Sam and we decide we are going to help the world, to give back. And we bullshit and we laugh and I run into an old high school classmate. Sam leaves and I engage with her until my time is up; my mouth has run dry, the painkillers have receded. The narcotic warmth I once felt is slowly creeping back inwards from my fingers and my toes, back into my gut, and I know I must be going home.

I get a cab and my friends are in Bushwick, telling me to come to the show, but I give the driver Genevieve's address, where I am staying while she is away. I climb into bed, and I count out my pills and I do not feel lonesome, not yet. This act is familiar.

Two hours I awaken and the pain is red hot, black mascara tears streaked across the pillow case, my face swollen, eyes puffy. I have to be at the museum in 8 hours but I do not sleep for the rest of the night. I take the drugs, I read, I mumble the f word until I linger between feeling and sleep.



On the subway uptown I think of the ways I will avoid the pain today. I text message pictures of my mouth to my friends in med school. We agree that upping the prednisone will heighten my blood sugar but will decrease the sore and that needs to happen, because the sore, the big one, it is a white albatross on my tongue, a crater, an open wound in the most vulnerable of places. I buy Anbesol for 10 dollars at Duane Reade and subway drivers look at me, ever so briefly, as I apply the coating.



At the museum, I have fun, I hold babies and I make children laugh but I cannot forget about the pain; it takes the wit I have and it dulls it, as sharp as the butter knives the Indians used to husk corn. I point out the tools to the kids, and they are amazed at the hunting and gathering done so many years ago.

Sometimes I want to talk in sentences and paragraphs but I cannot and when Claire and Jess ask how I am, I cannot lie. I am finding more and more that the lie I have told so much: "I'm feeling better!" will not come. It sticks, stubborn in my throat. They know how to do nothing else but to hug me; this is enough, it is what I need. Slowly the Anbesol I have reapplied saves me, and I forget momentarily that my day's obscured by sickness.



It is on the train ride home that I let the drink I had at the station mix with the half of the painkiller I had left and I lie across an empty seat and thank the NJ Transit worker who let me into an empty car when she saw that I could not be among the others, the noisy others. She found me a bathroom and an outlet and did not ask me about the tears of pain and exhaustion in my eyes.

What I am saying is that there is kindness here, in this world.

When I get home I finally scream, I throw up from the pain, I let my mother rub my back. She does not tell me to buck up, to think of the children in Africa. I reach out in a wild rush to a friend and his response is as perfect as one's can be. My cancer friends remind me of things to look forward to.



And I do, I do, I see how good I have it, I see this love-filled life I have, I see the miracle that is being me. I see my strengths and I loathe my weaknesses. I love my life; I want to leave it forever.

I cannot change the physical pain, though, and I fear it is slowly taking me away. Am I defying this fate or am I avoiding it?

I am avoiding it, and I will, for as long as I shall live.